A while ago my friend and fellow mom to a “different” child, Susan Wagner, wrote a piece called What It’s Like which I have often, secretly (until now) gone back to read when I need a little boost of solidarity. Susan says:
The hardest thing for me about parenting Henry has been the sense that every time I get my feet under me, the ground moves again and I am left struggling to get my balance. I think Henry is doing well, I can see that heâ€™s doing well, but now I am worried all over again, and I am worried that maybe Iâ€™m not really helping as much or as well as I could be.
One of the things that I am trying to let go of is that constant worry; Iâ€™m trying to look at my children, both of them, and see not what might go wrong but what is going right. But I worry that with Henry, if Iâ€™m not ready for the disaster, I will be completely overwhelmed when it comes and will not be able to help him. And so I wait for the next bad thing, which is never â€” ever â€” the bad thing I was waiting for but always something I am completely unprepared to deal with on the fly.
I am deep in the midst of “completely unprepared to deal with on the fly” and I am so afraid I’m doing it wrong.
Monkey has been doing really well. REALLY WELL. He has hit his stride at school and is doing well with his friends and being sweet and charming and everything I associate with the very heart of my sweet, tender son.
At least, he was.
See, I knew that the orthodontia was going to be hard for him. I knew that as a “sensory kid” he would experience more pain than a kid who is not wired a little wonky when it comes to sensory input. I knew there would be an adjustment period.
And then he wouldn’t eat. And he wouldn’t drink. And while I spent the week trying to get him to consume something—anything—I missed it. I just completely missed it.
He started eating again (a little) and I rejoiced and asked if he was feeling better and he said yes and so I STILL missed it, because I wanted to believe we were on the road to recovery and the hard part was over.
The occupational therapist once described kids like Monkey to me as as pitcher that can hold a finite amount of liquid (or sensory input). Each addition to the pitcher raises the liquid level, and normal people both don’t experience that input as being such large amounts and are better at “pouring off” when necessary. Kids with sensory integration problems experience every input as a huge cup poured into the pitcher, and find themselves overflowing in very short order.
Well, you know, we’d worked out a great system, here. Monkey does his occupational therapy, he takes his anti-anxiety meds when he needs them, and for the most part he’s on a pretty even keel.
Then he got his devices put in, and now there’s all this pressure in his mouth.
Then at soccer practice this week, someone’s dog managed to circle him and wrap the leash around his legs and it cut him a couple of places.
Then he started eating again, but still not really enough, and so he’s constantly complaining of hunger but unwilling to try to eat more.
This kid’s pitcher has been overflowing all week and I missed it.
We had our first soccer game this morning. Monkey was SO excited to be back out on the field—it’s all he’s talked about for days. He ran around like a puppy, huge grin on his face.
And then he and another kid went for the ball at the same time and he got knocked over.
He went—in a word—apeshit. “SHE PUNCHED ME!” he screamed. “SHE’S TRYING TO KILL ME!” The coach is great and tried talking him down but when he was given the option of shaking hands or having a sub come in for him and Monkey was still screaming bloody murder, I knew there was no way it was going to end well. I stood there while my son mouthed off to the coach and was embarrassed but knew I had to let him handle it, but then when he finally agreed to shake hands and the other player came over and Monkey just about yanked her arm off, I was mortified. The coach put him on the bench and put in a sub.
The girl whose arm he’d yanked stood on the field crying while her coach explained that she had done nothing wrong, it was that other unsportsmanlike player who was in the wrong here, and I willed the tears trying to drip past my sunglasses to stop, stop, wait until later.
Monkey was over on the sidelines crying and carrying on, insisting that the coach put him back in. I tried very hard to think loudly enough for the coach to hear me DO NOT PUT HIM BACK IN, but the coach—who is new this year and does not know my son—went ahead and put him back in a few minutes later.
This time it was less than a minute before he took a tumble, and as he lay on the ground seething an opposing player happened to wander too close and Monkey kicked at her, viciously, like a wounded animal.
The other coach called for Monkey to be ejected, and while the eyes of all the other parents burned into my back I hauled my flailing, screaming, inconsolable son off the field and up the small hill above to plunk him down and wait for him to stop shrieking.
I tried to talk to him several times, too early, while he continued to cry and protest, and after a while I gave up and let him cry himself out. When he was quiet I asked him if he understood what had just happened. I asked him if he knew what a red card was. He continued arguing and yelling.
Finally I asked him if he knew that he’d made that little girl cry, and the angry monster in him broke and he sobbed, the fury drained out of him, as he realized what he’d done but that he had no idea why he’d done it.
We watched the rest of the game, and then we came down the hill and he apologized first to the opposing coach, then to the girl whose arm he’d hurt (shaking hands nicely this time), and then having a talk with his coach.
Some of the parents from the opposing team averted their gaze as we came by, and others plainly stared and asked if he was alright.
“He’s having a rough week,” I said, my arm holding him close, anchoring him to me as if he might drift away in the wind if I let go.
We drove home in silence. When we pulled into the driveway, Otto sent the kids inside and we sat in the car while I finished crying.
Monkey had some lunch and some quiet time; Chickadee and I went out and ran some errands. Later the kids played awhile. I gave Monkey some more Motrin and he told me he was feeling better.
We had plans to visit with friends for dinner tonight. About half an hour before we were to leave, Chickadee was on the phone with her dad and told him that Monkey got taken out of the soccer game, and he overheard and ran into the room in a rage and hit her. Clobbered her but good, too.
He was sent back to his room, where he railed and cried and told me over and over that it was her fault.
I sent Otto and Chickadee over to see our friends.
After a while I went to talk to Monkey. He was back to being contrite, and when he heard that dinner was continuing without us he was heartbroken.
“B-b-b-b-ut I need one more chance,” he sobbed. “A-a-a-a-and YOU didn’t even do anything wrong and you didn’t get to go because of meeeeeeeee!”
“Sweetheart, you don’t get ‘one more chance’ when you hurt other people,” I told him. “And I am really, really worried about you. Because you are the sweetest, kindest person I know. My Monkey doesn’t hurt people. Something is going on with you and I want to help fix it. This isn’t like you.”
He continued to snuffle and cling to me. “I don’t know,” he wailed.
“Is your mouth still hurting?” I prompted. “Is something ELSE hurting? I gave you some Motrin, you know.”
He nodded against my shoulder. “My head,” he cried. He sat up and wiped his eyes and looked right at me for the first time all day. “My head, Mama. It hurts. It hurts so much, it’s so LOUD all the time. The Motrin doesn’t help fix loud. When it’s so loud I get MAD.”
At that point it feels like there’s nothing left to say, because the volume in his head is turned up to 11 thanks to the sensory overload in his mouth, and when I look at it that way, no wonder he’s so angry. On the other hand, he can’t go around having tantrums and hitting people, and he knows it; and yet here we are.
So I didn’t say anything, I just held him and wrapped us up in a blanket and rocked him and stroked his hair and hoped that maybe for a minute or two, things were quieter for my baby.